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Living with Alzheimer’s

Dart and Margie Whitmore stand in their beautifully landscaped backyard with their recently adopted dog, Bella. Dart was diagnosed with Alzheimer’s disease roughly two years ago and has since been making practical life adjustments in preparation for the inevitable progression of the disease.

— image credit: Sequim Gazette photo by Alana Linderoth

The human brain is the most complex organ of the body. Weighing about 3 pounds, the brain “is the source of all the qualities that define our humanity,” according to the National Institute of Neurological Disorders and Stroke. The brain could be considered the human body’s control center given it provides the ability for imagination, thought, memories, movement, experiences, interpretation and essentially all behavior.

For preservation the brain is surrounded by protective fluid within a bony shell, or simply put the skull.

Although the brain is incredibly complex and well protected, it is not always safe from the grasp of disease, including the most common form of dementia – Alzheimer’s.

Sequim resident Dart Whitmore was diagnosed with Alzheimer’s about two years ago. Though he can’t recall his diagnosis, Dart said he is quite aware of the changes. He is one of more than 150,000 individuals in Washington living with the disease – a number anticipated to triple by 2050.

“It can be an extremely isolating situation,” Dart said. “I have an understanding of how it (Alzheimer’s) will progress. In due course I will be in what is considered ‘lala land.’”

Although Dart has been living with the disease for a couple of years, he is still in the early stages and therefore able to hold a multi-hour conversation with no apparent troubles, although he admits it’s exhausting. He still indulges his love for reading, pursues his passion for cross stitch, even cooks once in a while, but no longer drives.

“He (Dart) loves to have wheels under him,” said Dart’s wife Margie Whitmore. “He doesn’t care where we’re going, just as long as we’re going.”

The Whitmores moved to Sequim five years ago from California in anticipation of traveling around Northwest, but Dart can predict they won’t get to travel as much as he had hoped. However, within the past few years Dart has helped Margie learn how to drive the motor-home, allowing the couple to still explore places locally and take advantage of the present.

“In a way it (Alzheimer’s) can be devastating to me,” Dart said. “The only thing that is a plus of this because I’ve driven all my life is now I can look and see the country.”

The Whitmores’ plans for vacationing are only one of many life adjustments they’ve made and are making because of Dart’s diagnosis and in preparation for the future.

“There’s a stage of denial and anger and then there’s a stage of, well we didn’t sign on for this cruise, but we’re on it,” Margie said.

Considered a public epidemic

Although Dart is 81 years old, Alzheimer’s disease is no longer considered a disease that only impacts the older population. About 5 percent of the total population living with Alzheimer’s are considered to have early-onset Alzheimer’s which can appear from around age 40 onward, according to the Alzheimer’s Association.

“Alzheimer’s is what we believe and consider a public health epidemic,” said Bob Le Roy, executive director of the Western and Central Washington Chapter of the Alzheimer’s Association. “Alzheimer’s is the third-leading cause of death in Washington.”

In 2014, it cost $214 billion nationally to care for those with Alzheimer’s and other forms of dementia, Le Roy said. Because of the high costs associated with Alzheimer’s, it is considered the “most expensive disease in America.”

In recognition of both the high costs and the projected increase of the disease as baby boomers age and their risk increases, a National Alzheimer’s Project Act was established in 2011 and called for a National Alzheimer’s Plan.

In 2012, the national plan was released and it was updated and re-released in April. Among the plan’s accomplishments last year was it provided funding for states to develop long-term support systems and services. Since, “44 states have enacted or are in the process of enacting an Alzheimer’s state plan,” according to Senate Bill Report SSB 6124. In March, Gov. Jay Inslee signed the Senate Bill 6127 that provided the legislative authorization to develop a plan for Washington. A state plan is scheduled to be presented to the Legislature on Jan. 1, 2016.

In preparation for the initial public meeting on the state’s plan scheduled in early September, the Alzheimer’s Association held town hall meetings throughout August to gather feedback for public policy priorities. The association visited Sequim on Aug. 14.

Economic and caregiver challenges

“The state plan will need to address the costs associated with the disease,” said Ian Napier, a retired anesthesiologist and husband of a woman with Alzheimer’s at Dungeness Courte Memory Care. “Charges are usually more than $100,000 a year and most can’t afford that so they get on Medicaid but then trying to find a place with Medicaid beds can be challenging.”

Fortunately Napier said he can afford to pay for his wife’s care for a “period of time.” He also feels fortunate because he has a supportive family and with inner-family collaboration it wasn’t until his wife reached the very late stages of Alzheimer’s that she moved into a memory care community.

“People have no idea how much it costs for long-term care,” said Kathy Burrer, executive director for Dungeness Courte Memory Care. “Being a high geriatric community (Sequim) we need to think about these things.”

One of the most challenging aspects of balancing costs associated with memory care facilities are the caregivers. In general, caregivers are underpaid within the industry, Burrer said. On average Burrer estimates caregivers in Sequim are paid between $10 and $12 an hour – a wage she considers hardly a living wage and “tragic.” Managing costs is challenging because it already is expensive to provide the standard of care as is and if caregiver’s wages were increased, the rent also would need to be increased, which Burrer already feels is expensive.

“It becomes a vicious cycle trying to manage the costs,” Burrer said. “I think it is very important for people to understand however that people don’t become a caregiver because it is the only job in town. They do it because they care.”

Unlike Discovery Memory Care, Dungeness Courte Memory Care does not have any Medicaid beds. However, the Medicaid beds at Discovery Memory Care are limited to those that already are living at the facility and who’ve run out of funds. Discovery Memory Care only can afford to provide a limited number of Medicaid beds because of the reduced reimbursement rate from the state.

“It’s really hard to tell how the Washington state plan will impact us,” said Pam Scott, community relations director for Discovery Memory Care. “We would like to see the plan address some of the financial aspects.”

Because the “needs for someone with Alzheimer’s can get pretty extensive,” they require both close and special attention, Scott said. After a certain point skilled nursing facilities aren’t always set up to provide the type of care necessary and the security needed as people with Alzheimer’s can begin to wander.

“For the size of the community that we have there are a lot of memory care beds, but then again there really aren’t a lot them west of us,” Scott said. “Within a six-block radius of here there are more than 100 memory care beds and most, if not all are full. What does that say about our community?”

Although there are facilities and communities that can handle Alzheimer’s and dementia, there are really only three fully secure (equipped for memory care and potential wandering) communities in Clallam County. All three locations happen to be in Sequim, Scott said. The three communities (Dungeness Courte Memory Care, Discovery Memory Care and Sherwood Special Needs Unit) stay pretty close to capacity the majority of the time, a fact Scott finds sad but true.

Given the limited amount of truly secure memory care beds, options for those waiting to enter a memory care facility boil down to care at home from either a caregiver or a family member that takes on the role of caregiver, Burrer said. Given this scenario, both Dungeness Courte Memory Care and Discovery Memory Care provide day stay programs to provide the caregiver some respite time. Burrer and Scott agree oftentimes the person at the greatest health risk is the caregiver because of the energy it requires.

“Sixty-five percent of caregivers die before the person with dementia,” Burrer said. “It takes a toll on your personal health.”

The day stay programs also allow the person with Alzheimer’s an opportunity to socialize in a safe environment, Burrer said.

A social stigma

Adding to the financial complications associated with Alzheimer’s disease, the predicted increase and the health toll absorbed by caregivers, those with Alzheimer’s often experience a social phenomenon or what is sometimes referred to as a “stigma,” Burrer said.

Dart Whitmore has experienced this “stigma” first-hand. Since being diagnosed with Alzheimer’s, he said he has noticed at times even his friends don’t address him anymore and instead direct their conversation to his wife. Both Dart and Margie said they’ve experienced this within the medical field, too.

Although Dart realizes at some point he won’t be able to remember much at all, let alone make decisions or even carry out a conversation, he also emphasizes he’s not there yet.

“At this point I just as well prefer to stay home instead of go out because people tend not to include me anymore,” Dart said.

The stigma of Alzheimer’s still is very prevalent, Burrer said. Through increased education and awareness, Burrer hopes generalizations like the assumption of aggressive behavior associated with Alzheimer’s eventually will fade.

Because Alzheimer’s is a degenerative disorder, the nerve cells within the brain are continually being damaged and the brain eventually begins to shrink and fill with fluid, according to the Alzheimer’s Foundation of America. This process is what causes the memory loss and changes in behavior.

It is common that people with Alzheimer’s tend to isolate themselves because they don’t remember how to interact with others anymore, Scott said. However more and more research supports that socialization helps to maintain peoples’ cognitive behavior longer.

In addition to more mainstream medical research, a growing awareness on the importance of socialization, arts and creativity is budding throughout the country. A handful of what are known as “memory cafes” or “memory art cafes” are popping up in cities, including Seattle, said Judith-Kate Friedman, founder and director of Songwriting Works.

Memory cafes are businesses that designate a certain period of time to open their space for a “stigma” free zone. It is a public venue where people with dementia, including Alzheimer’s, can come and socialize by looking at art, sharing a cup of coffee or simply interact with others within a welcoming environment.

Music and the collaborative creation of music also “provides a welcoming format to express each individual’s musical intelligence and to interact,” Friedman said.

Friedman has worked with people with various cognitive and physical needs for more than 25 years and in 2009 founded Songwriting Works. Through Songwriting Works, Friedman continues to collaborate with facilities such as Dungeness Courte Memory Care to interact with the residents through art and music. For example, when Friedman visits a memory care community she engages with the residents to create songs which they sing together. Not all the individuals may remember contributing to the song, but the sound still resonates with them, Friedman said.

“The essence of each person is still there and alive and we need to change ourselves to still engage with those in the moment,” Friedman said. “Music allows us to do that because the focus is not on what is no longer possible, but what is now possible and allow for that.”

Although the trials and tribulations of coming to terms with Alzheimer’s disease is perhaps impossible to put into words, the reoccurring words used by both of the Whitmores to describe their situation include frustration, guilt, denial, anger and loss of control. However, Margie also has been able to find the “beauty and grace” of their situation.

“We’ve had to learn to see the value in the opportunities that we do have,” Margie said. “We kind of learn to enjoy life when we can and where we can.”

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